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Volume 2 , Issue 1 Date: Winter, 2002 Topic: Genetics:
Scientific Advances...Human Choices

A Case Study in Bioethics

by Ronnee Yashon, MS, JD

Bioethical questions rarely have cut and dried answers. They include the scientific, legal and ethical considerations of a specific case. The case below asks these types of questions and will pique your curiosity to look into how such a case could affect you personally.

Since the Human Genome Project was announced in the 1990s, bioethicists have been arguing the many ethical and legal aspects of its future. Some have suggested that everything from eye color to genetic conditions would be controllable, and we would have the ultimate ability to change our own genes and those of our fetuses. But first we would have tests. Tests for all conditions and traits, tests that can determine both prenatally and postnatally what our children will be.

This case presents a scenario set in the future. It asks the question, who will be tested and for what and who will control this testing?

There was a wonderful party going on. Representative Roland Smith had been to many parties since being elected Congressman from his state, but this was the best.
The party was given by Maxigene, a large pharmaceutical company that had just developed a test for the gene that causes a serious condition. The condition is rare, serious and had no treatment or cure.

Finally, by the end of the evening, Maxigene came to the point. They were suggesting a law to having every baby born in the US tested for this gene. The company's president, Dr. Irving Dahler, made a short presentation. He explained how much time and money was spent to develop the test. Part of the funding had come from the Orphan Drug Act, but the company had put up hours of research and development. Even though the condition is rare and probably only 1/10,000 people carry the gene that causes it, Dahler suggests that parents would want to know this information about their newborns, and eventually, their unborn fetuses.

Today, states test for many genetic diseases, as mandated by law. But in the future, companies will want to recoup the money they spend on research and development and one of the best ways is to lobby politicians to legislate a law to test all newborns and possibly test for carriers.

Here are some thought provoking questions for you to think about. To see what some experts think, use the websites listed below each question.

What should Congressman Smith do if asked to sponsor such a bill?Today all babies born in hospitals are tested for hundreds of genetic diseases by law (which condition depends on the state). Should parents be allowed to refuse this testing now or in the future? Why or why not? What might happen, years from now, when we have tests for all the human genes?
What groups might argue against such testing and why?
Photo of Ronnee YashonRonnee Yashon, MS, JD, is a nationally known expert in teaching genetics, ethics and the law on all levels. She has a law degree and a background in teaching on the high school, undergraduate, graduate and law school levels. Currently, she is teaching Law and Genetics at the Experimental College of Tufts University and running genetics seminars for attorneys on the East coast and Midwest.

Ronnee is a recipient of the Presidential Award for Excellence in Science Teaching (1989) and the Outstanding Biology Teacher Award in Illinois (1990). During the last four years she was the Educational Coordinator for the Wright Center for Science Education at Tufts University, during which time she ran numerous workshops for science teachers and disseminated interdisciplinary lessons at local and national conventions, including NSTA and NABT.

As an invited speaker at inservice meetings for secondary teachers and for two and four year college associations, Ronnee's talks have been greeted with enthusiasm. She has helped bring new ways of presenting old topics to the participants at these talks and still corresponds with many of them.

Her case study methodology for introducing bioethics and law in the curriculum uses simple, personalized and current scenarios that involve the student in decision making. Ronnee has presented this case study method all over country and, her two books, Case Studies in Bioethics I and II, have become popular and are being used on all educational levels. Her new book, Landmark Cases for the Science Classroom, uses an interdisciplinary approach and emphasizes the importance of how law sees science. Her two new minibooks, Case Studies in Bioethics III and IV, focus on Genetics and environmental issues. The implementation of science oriented law courses in current law school curriculum is her newest interest. Her bioethical supplements are in major science texts and allow teachers of non-major science courses to integrate law and ethics into their curriculum, making it more relevant to the students.

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